In July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. Visit Adam's Appeal at http://adamsappeal.org.

Monday, 19 March 2012

In truth not much has happened since last time. There was the little matter of Adam's central line coming out on the 9th. An event that prompted Adam to declare it had been 'the best week of my life', this despite spending all but one day of it in a hospital bed. After the happy drugs they used out in Germany it was back to business as usual where Adam and anaesthetics are concerned. I had a meeting at the Royal Marsden first thing to discuss the current situation with Adam, and then followed on to St George's after lunch. I hadn't been there long when Alison's pager began alarming to indicate our presence was required in recovery. We could hear Adam shouting before we even got into the room. I walked in … and was promptly ordered back out again "TELL DAD TO GET OUT OF THE ROOM!" And if that wasn't enough "TELL DAD TO GO HOME." Pause for breath. "TELL. DAD. TO. GO. BACK. HOME!"

I retreated back out into the corridor from whence I'd come. A few minutes later they wheeled Adam out of recovery and back on to the adjacent Jungle Ward. I looked directly ahead out of the window, not daring to make eye contact with my wild child. Once on the ward Adam calmed down sufficiently to allow me to sit in the parents room; I still wasn't allowed in the bed bay where he was. As the anaesthetic wore off he started to come round and eventually I was allowed back into his world. Alison took off so she could get back to watch Jake play his cricket finals. And to be fair to Adam he had completely calmed down by this point, and never moaned once. He had lunch around 3pm, having eaten breakfast at 7am. At one point he had a look where his 'wigglies' had once been and gave me his considered verdict … awesome!

When he first got up out of bed, he stood rather oddly to the side of it, strangely unbalanced; even though his hickman line wasn't a great weight he was somehow subconsciously trying to compensate for it's absence. It didn't take him long to get used to being rid of it though. As we left the hospital to return to Epsom he pondered on how long it had been in. "Two-and-a-half years." he said "I never thought I'd have wigglies in for that long." And then, as if to justify this last statement when in fact I'm certain he'd never considered it before even for a minute "When it was first put in I thought maybe I'd need to have it in for like a year or something."

We drove back to Epsom General via home so that Adam could have a cooked tea. Yes it was unauthorised, yes I'm bad, and no I am not the least bit remorseful. He stayed in Epsom General for a further 48 hours antibiotics as a precaution, it not being uncommon for the removal of an infected line to lead to further infections. On Sunday Adam spent most of the day at home, and after returning to hospital for his evening antibiotics was formally discharged.

He stayed at home Monday through Wednesday, but was back at school Thursday and Friday. Two weeks off school and the only clinical symptom had been a temperature of just above 38 degrees for around an hour! He hasn't had any problems since and has been revelling in his new found freedoms. On Thursday, after he'd removed the dressing and butterfly stitch from the entry wound he fully immersed himself in a tub of bath water for the first time since 2009. He even toyed with the idea of having another bath on Friday evening even though that's his night off!

No more bungs to be changed for a while, no more dressings to be changed for a while. The skin around Adam's left nipple that only experienced fresh air for a few minutes each week is now free again, at least for a while. We will be doing blood draws every fortnight, but Adam is find with being cannulated for this. It's a small price to pay.

Adam is due to begin his eleventh, and penultimate, round of 13-cis-retinoic acid on 30th March, and on 11th April we go back to the Royal Marsden for a follow-up MRI. That will be six weeks since the last one, that showed no change in the suspicious node (or lesion) identified on the MRI in Germany five weeks before that. We are working with the Marsden on what to do next once we've completed a year of retinoic acid, but clearly everything depends on the MRI. As such, it continues to hang over our heads, but really there is no point dwelling on it right now. As much as ones inclination is to want to do something it really does seem that wait-and-observe is the most appropriate course of action at this particular time.

Thursday, 8 March 2012

Adam's central line will hopefully be an ex-central line by the end of Friday afternoon. He is pencilled in to have it removed at St George's Hospital, Tooting. We know it's not a major procedure, but it's also not high priority so it won't definitely be going ahead until it's gone ahead. We don't know how long he'll be in St George's, hopefully it'll be a quick in and out. The facilities for food preparation there aren't brilliant, though there's nothing unique in that. The only hospital we've ever been to with a fully stocked kitchen in which you could actually could cook something was in … Germany. And although St George's is only eight miles from our house the route to get there involves negotiating around three hundred different sets of traffic lights and takes an inordinate amount of time. Friday afternoon? No chance of getting there with food still warm let along hot. Not to worry, the campervan is coming out of hibernation. We've cooked in a hospital car park in Germany, no reason why we shouldn't do the same in South London if needs be.

As for today, Adam's still in Epsom General, but will hopefully be allowed a few hours home leave later on. Am unsure whether or not he's being electronically tagged at this stage. ;-)

Tuesday, 6 March 2012

On Wednesday, the day before Adam first ended up in Epsom General on antibiotics for a line infection, Alison took him up to the Royal Marsden to have his repeat MRI scan.

The results were due on Friday. I know I blather on a lot about stuff on here, but all the same I don't possess the gift of words. I cannot begin to convey to you just what it feels like to know a call such as this is coming. At some point. Today.

The phone is ringing.

The enlarged lymph node, or mass, is still there. It hasn't gone, it hasn't got any smaller. But most important of all it hasn't grown either. It's still exactly the same size as it was five weeks earlier when it first showed up on the MRI scan out in Germany.

What does that mean?

It means it hasn't gone, it's still there and it's the same size. It hasn't got any smaller, and it hasn't got any bigger.

Yes, but what does that mean?

It means it hasn't gone, it's still there …

WE DON'T KNOW WHAT IT MEANS.

Well what is it?

WE DON'T KNOW WHAT IT IS.

I know lots of things, or I like to think I do. And yet when it comes to my own son I know practically nothing. So ironic, when it matters most I simply don't have a clue.

The general consensus of the team at the Marsden is to adopt a wait-and-observe approach. So I suppose that means another MRI in a few weeks time, although I haven't confirmed that with them yet. I have a meeting scheduled on Friday morning with Professor Andy Pearson, head of the children's unit, to discuss.

I also emailed Germany with the result and asked for their opinions or suggestions. They haven't been very forthcoming, by which I mean they don't reply. I'm not entirely sure why. Maybe they also don't know, or maybe more likely they remain convinced it's neuroblastoma, but don't want to say because they think it's not what I want to hear. Or maybe they don't want to tread on the toes of the doctors in the UK. Who knows? Not me, because I know sod all …

Adam's been home for the last couple of days, doing fine. He was discharged into our care and we've been taking care of him. We flirted with the idea of letting him go to school but erred on the side of caution and responsibility. He's been totally fine except for some pretty dry skin caused by the retinoic acid that he's back on, and which seems to be worse than it has been for a while, but maybe that's because we're back to the original schedule of two weeks on and two week off.

There's no doubt our lives are a bit of a mess and have been for ages now, but we try to do the best we can by all our children, even though it's hard on them at times and sometimes they don't always see it. Today Jessica was representing her school at a sporting event in Guildford so naturally Alison wanted to go and watch. It can't always be about Adam. So I ended up working from home and his Lordship stayed with me and did his own thing in the back room where he wasn't any trouble. Every now and again I'd hear him trundle up the stairs and come back down with some or other thing to play with and he'd head back off into the back room again. I made him some lunch, he ate it, complained he was still hungry, asked for more food, I obliged. All very good and proper.

The phone rings.

It's the doctor from Epsom Hospital.

Previously there'd been some mix up about whether the bacteria they'd grown had come from the red or white lumen. We'd assumed red, our money was on red. The paperwork had said red. Yet the written note said white. So I thought this was clarification one way or the other. Well it was clarification … of sorts.

"I've spoken to the microbiologist and this is what's grown from Adam's blood cultures. On the 1st they grew Micrococcus from the red lumen and Diphtheroids from the white lumen. On the 3rd they grew Gram-positive cocci from the white lumen. On the 4th they grew Gram-negative rods from the white lumen."

Bloody hell. So much for Adam having an infection. He, or more likely his lines, are riddled with them.

I spoke to Adam's consultant and we agreed the best course of action would be to arrange to have his central line removed. In the meantime he'd need to be started on two more antibiotics for the Gram-negative infection, in addition to the one he was already on for the Gram-positive. Also, it was best if he was in the hospital as the potential for a Gram-negative infection to very quickly turn nasty was much more of a serious threat than had been the case before with just Gram-positive.

I explained everything to Adam. He didn't complain at all about having to go back into hospital. He got quite upset though when I told him we were going to have his line taken out, and actually started to cry in protest. I guess it's become a part of him over the two years and seven months that he's lived with it; part outside him, part inside him. He was five when it was first put in, he's a worldly-wise eight year old now who's seen, and been through, more than most.

I took him up the hospital soon after 4 o'clock to have his antibiotics, which of course weren't written up and ready until gone 6pm - at precisely the same time that meals-on-wheels arrived with our food. No problem, the nurse was very nice and didn't seem to mind being sent away again until Adam had finished his tea and we were ready.

The kids played on the Wii for a while and then it was time to leave Adam and Alison to it. All that remained was to pay the four pounds that it costs to leave your car at the hospital for two hours, and for the rest of us to return home.

So that's us. Instead of being a 5 we're now a 3 and a 2 again. Me, Jake and Jess are back at home, Alison and Adam are back at the hospital. We've got no idea how long this stint inside is going to last. At least Adam managed two nights at home before he got banged up again. And I suppose we should be thankful that he isn't actually unwell …

Monday, 5 March 2012

Adam had 3 lovely days at school last week. We started to get a routine going that meant everything was done and dusted, and he was ready to begin lessons at 10:30 after first play. Next step was to try and bring bedtime back a little so perhaps the morning routine could be done even quicker, and he could get to school sooner. He stayed right through until the end of school and Alison picked him up along with Jessica. He ran home, he scootered home, it was … almost … normal ...

On Thursday Adam was admitted to Epsom General with a line infection, and there he remained for the next 3 days. Yesterday he was discharged into our care, but he's still having antibiotics. Alison has taken him up the hospital tonight for them as they're every 24 hours. It's only a small amount of antibiotic that is pushed intravenously through his central line, so it doesn't take long. From tomorrow we're hoping the community team will be able to come in and do it at home to save us the trouble of taking Adam up to the hospital every afternoon.

Now I shouldn't complain because Adam has had his central line in for over two-and-a-half years and this is only the second line infection he's ever had. The other was only a month or two into treatment. I say shouldn't complain, but this is me we're talking about. I can always find something to complain about, but we'll get to that later.

Although Adam has a line infection, confirmed through blood cultures (gram positive) he isn't ill, hasn't been ill. This has been going on for a while, but it's only now looking back that we realise. It started we think in Germany. I actually wrote about it on here, we thought the technician got residue from the alcohol spray in Adam's eyes before his MRI scan. He complained of dizziness and couldn't see. He was fine afterwards, and we thought nothing more of it.

After we returned home we resumed the normal routine of our Community Nurse coming in to change Adam's bungs and dressing, and take weekly bloods to be tested for the Royal Marsden. Whilst I was away at the symposium in Germany Adam had another episode where he complained as his line was being accessed. Again it didn't last long, he recovered quickly, and his blood was drawn as per usual. However, for the remainder of the day he was subdued, and spent far more time than normal lounging on the sofa watching the television.

At this particular time we knew that we had this suspicious finding on Adam's MRI, and in addition had found out only a couple of days beforehand that cells from his bone marrow had tested positive for anti-GD2 staining at the lab in Vienna, and were undergoing further analysis. So I can tell you how Alison was feeling when Adam started being lethargic and not wanting to do anything. She was worried, and all manner of nasty thoughts were going through her mind about disease progression. Whilst it hadn't escaped her that there was a possible, even probable, link between what had happened that morning and how Adam had been during the afternoon, under such circumstances no amount of rationalisation is going to persist. You can pull yourself away from those ugly thoughts for a couple of minutes and look at things perfectly objectively. But once you're no longer completely focussed on trying to be objective those dark thoughts coming roaring back in. It's not difficult to convince yourself that what a minute ago was you being objective wasn't actually you being objective at all. In fact it was just you trying to come up with something to give you an excuse not to face the obvious and horrible truth. You think I'm crazy? I'm not crazy. This is just how it is.

Anyway I digress a little. We got the results from Vienna, the bone marrow was clear. Adam was back to his normal self, going to school, plenty of energy, wanting to go outside and play football in the dark at seven o'clock in the evening. Last week when his bloods were done Alison and the nurse were on the lookout for problems, but all was fine. This Thursday, however, as the nurse pushed the smallest amount of saline into one of Adam's lines he was off again; light-headed, dizzy, can't see. At that point everything stopped and Alison took Adam up to the hospital to have him properly checked out.

As I work in town I walked up to the hospital at lunchtime to see what was going on. We came to the conclusion that there must be an infection in the red line, but the white line was fine. Adam's hickman has two separate lines (called lumens) inside it. They can be used independently of each other for intravenous access. When the nurses come to do bloods they alternate which line is used, so our hypothesis would account for Adam being fine one week but not the next. He had also been fine the previous day when they put contrast through his white lumen at the Royal Marsden during his repeat MRI.

When I got to the hospital Adam was fine. Bored, but fine. They had taken bloods to be cultured (to see if they would grow any bugs in the lab, which would confirm infection). Adam's blood counts were okay, he wasn't neutropenic i.e. his neutrophil count wasn't so low as to make his immune system unable to mount any defence against infection. CRP level (infection marker) was normal. We were discharged … almost. Adam started to complain that he was cold, but he felt hot to the touch. The thermometer confirmed it, 38.2°. Pants.

I did the correct and proper thing, I went and told the doctor. And she told us that under these circumstances we could no longer leave. They called upstairs to the inpatient ward and there was a cubicle that was about to come free that we could move into once it had been cleaned. Marvellous. Over the next 60 minutes or so Adam's temperature remained elevated, though not hugely so. The highest temperature we recorded was 38.3°. After that it subsided and by the time we'd gone upstairs it was normal again, which is how it has remained ever since. Ironically under these circumstances we almost certainly wouldn't have even brought him to the hospital had we been at home. During the early days of chemotherapy, when he became febrile and had no immune system then yes we complied totally with 'the protocol'. However, as things stood now there was nothing to be done except head upstairs where they started Adam on IV antibiotics (teicoplanin), a process that took all of two minutes.

By the following day Adam's blood culture from his red lumen had already grown a bug. Adam, though, was entirely fine. He was eating normally, sleeping normally, behaving normally, no fever, no clinical symptoms. Oddly enough he was rather bored and at a loose end, and wanting to go in the playroom which we have always designated as being completely off-limits (full of germs). I wanted to take him home, to have some food, stretch his legs, play with his brother and sister. However, the full weight of medical opinion was brought to bear. They couldn't allow me to do that. Well actually they couldn't stop me, but they put the fear into Alison to such an extent that we ended up going nowhere. Maybe I was wrong, maybe I was irresponsible, I don't know. I just figured this had happened twice before; he'd got a bug in his system from the red lumen, he'd had a reaction, he'd fought it off, he'd been fine again (until the next time). I wasn't arguing against the antibiotics, we had to have those to try and eradicate the bug. The next course of action, if the infection is too embedded in the plastic is to have his line removed, but we haven't reached that point yet. But I honestly thought the talk of sepsis, rapid deterioration, and being fifteen minutes away from the hospital not being good enough, was overblown. We wouldn't even have been in the hospital overnight had his temperature risen fifteen minutes later than it did. Where we really that fortunate that he developed that mild fever when he did?

All of the doctors at Epsom General know what a complete pain in the arse I am now anyway, if they didn't before. Alison's known for years, so it didn't come as much of a surprise to her.

So we stayed. Alison went home, cooked dinner and brought it back to the hospital. Proper little meals-on-wheels when she needs to be. Since we were last in Epsom hospital they've received some Starlight entertainment centres with a TV, DVD player, and Nintendo Wii; that was definitely something Adam enjoyed having the use of in his room.

The next morning (Saturday) I pestered Alison about when Adam would be allowed out of the hospital, but it was clear once the doctors had done their rounds they were still not supportive of such an idea. Don't get me wrong I completely understand (and understood) their stance. If they said it was alright for Adam to go home and then something happened the ramifications for them professionally would potentially be very serious indeed. I also like everybody up at Epsom Hospital, and have never had a bad word to say about any of them. I just like being contrary and having something to moan about is all.

Jake and Jess bugged me to take them to the hospital after breakfast, which is really rather odd as normally Jake can't wait to get out of the place. I weighed it up and figured if I took them straight away Alison would have to come home and make lunch. So off we went.

I imagine Alison would have been in the process of packing the food bags ready to bring them back to the hospital when the doctor came in with the news. She'd spoken to the Royal Marsden and they were happy for Adam to go home for the rest of the day, and come back to the hospital in the evening to have his antibiotics and sleep. Having played Scooby-Doo on the Wii for a while at the hospital Adam and Jessica proceeded to come home and play it on the PS2 for the rest of the day until Alison took Adam back just before 7pm.

On Sunday I dropped Jessica off at the hospital and took Jake to his football match. I checked my phone as I got in the car to drive home and saw Alison had sent me a text message … "Discharged!" So here we are, now a question of waiting to see if the course of antibiotics is enough or more drastic action is required as far as Adam's central line is concerned. One thing Alison and I are both agreed upon is we are not going to mess around, if we have another incident that line is coming straight out …